July 27, 2013

Because

Because her innocent smile makes my heart so happy.
Because her playful nature can always brighten my mood.
Because her willingness to try new things and not give up inspires me daily.
Because my sweet girl will turn four on Monday.
Because my baby has somehow become a big girl.
Because I'm always a little more emotional around birthdays.

July 12, 2013

My issues, not hers

I was talking with a friend recently about how I rarely blog anymore.  I commented how it was so much easier to do it in the early years when there was so much going on.  She was in and out of the hospital, having surgeries and blogging was a great way for me to share and it helped me to process all that was happening.  However, for the last two years things have been different, really different.  Do I dare say life has become very "routine".  The big difference is that Annabelle has been very healthy!  She's been sick only a few times and has only had one non-Spina Bifida related surgery (tonsillectomy).  We are truly thankful for her good health and the progress she has made.  When I think back on those first two years it honestly seems like another life.  It was HARD, it was HARD on all of us.  She was so sick all of the time.  It was a very scary, stressful time.  I pray we never have to  repeat those days.
However, with that said I would be lying if I acted as if there hasn't been some challenges.  Unfortunately, stress and fear doesn't just go away.  It stays with you and it creeps into your day when you least expect it.  I worry a lot.  I worry too much.  I get overwhelmed easily and its hurting me.  I'm glad though that I am the one hurting and not my girl.  She is still the cheerful, optimistic, ready for anything spitfire she's always been.  She sees the world and gets excited.  She doesn't see the barriers I see.  She wants to do everything her brothers do and is determined to make it happen. I pray that she will always have that determination and that spark to get things done.  I pray that my fears and worry for her future won't ever hold her back.  
These photos are from this past Father's Day, Sunday June 16, 2013.  I love the way they capture her and all her personalities!           
She sat peacefully watching the waves.  I watched her and wondered if she was sad to not be running around and climbing on the bars like her brothers.
You be the judge, but I think she was having a fine time kicking back giggling in her stroller.
 
Here she is coming to get me!  The boys were playing tag with Branden and although she tried to join them she ultimately decided to come hang with me.  I worried she was feeling left out.  
She wasn't!
She wanted to play tag with me.
She wanted me to chase her - so I did!
 She was giggling the whole time!
 Then came a little bit of her girl drama.
She was smirking the whole time.
 Then it was play time again........
Oh how I love this girl!
 Day's like that help to ease my worry and fears.  When I see her beautiful smile I am once again reminded that these are MY issues and NOT hers.  She is going to be just fine, better than fine.
My girl is going to be great!  My girl already is great!    

July 10, 2013

Keep pushing forward

I had been talking with Annabelle's Physical Therapist and her Orthopedist about wanting to get Annabelle a pair of canes or crutches before the end of (last) year. I started these conversations early in the year (around February) and as we approached October it was apparent that nothing was going to be done about it. Sadly, I knew it was time to seek out some additional partners who were as serious as I was about getting Annabelle to the next level. That is when I reached out to Laurie, a highly respected physical therapist in Orange County. She is the owner of her own private practice, South Coast Therapy. I had been given Laurie's name and telephone number about 9 months prior and had been holding on to it. Around summertime (2012) Annabelle had been placed on what's referred to as "maintenance mode" and was only receiving PT twice a month which as you can imagine I was extremely unhappy about. I was told it was the correct frequency for where she was at but sadly I knew it had a bit more to do with some staffing issue. We made the decision to take a short break from our regular physical therapist to do what's referred to as an "intensive". Laurie has a very tight schedule with her patients and teaching schedule at a local university so the fact that we were able to be seen by her was truly a miracle and such a blessing. It was a wonderful experience to say the least! The intensive consisted of Annabelle being seen 2 to 3 times a week for 5 weeks. They originally wanted to see her 4 times a week for 4 weeks but I just couldn't manage that heavy of a schedule with her other commitments and my commitments to our other two children. Annabelle made great progress during her five weeks with Laurie. Laurie, the new PT had these fun little canes at her office that she introduced to Annabelle on our first visit. It was so awesome to see how well Annabelle took to them the very first time Laurie handed them to her. She was very interested and they were great to work with even if they were a bit too tall.
During the time Annabelle was being treated at South Coast Laurie not only worked with Annabelle but she tirelessly worked with our insurance company to find Annabelle a pair of canes that would fit her needs. We quickly found that there are NOT a lot of pediatric canes out there and most are pretty heavy. This was a bit disappointing but Laurie didn't give up! We didn't find exactly what we wanted but what we settled on has been good. Laurie ordered Annabelle a set of blue (pink and red were sold out) pediatric quad canes and they were delivered just in time for our very last "intensive" session with Laurie. We see this canes as a good bridge between the walker and forearm crutches that she will one day have but is not ready for yet.
Fast forward less than six months and wow, it amazing to look at the great progress she has made! We returned to our former therapist in January (who we really do think is great) with our new canes and are finally on a twice a week schedule.
At Jack's First Holy Communion - May 4, 2013 
Although, Annabelle does not use the canes every day she knows how to use them and is getting stronger and faster with them daily. We remember that it took her a full year to become proficient with her walker so we have never had unrealistic expectations about her use of the canes. We did however know that in order for her to keep pushing forward we needed to get those canes ordered. I am so thankful for the choices we made and for the progress Annabelle is making.  
Believe in yourself parents - 
You know your child best and you know their needs.  
Keep pushing forward!







July 7, 2013

First Day of Preschool

 I knew the day would finally come that she and I were both ready for her to start school and it did.  On Tuesday, April 9th Annabelle had her first day of preschool.  There were a few tears from us both but mine were a mixture of sadness and happiness.  I was sad because she is my last baby and she is growing up so fast but I was happy because I knew she was ready and that she would love it.

She attended 3 days per week from 9 to noon and it was a great introduction to being away from mom and making friends.  She was only there 8 weeks before it was time for summer break but it was definitely a good decision to start her even though it was late in the year.  I won't lie and say that it was a smooth experience because it wasn't.  There were some definite bumps in the road but I am happy to have worked through them at the end of this year and not at the beginning of next year.

I like the teacher and her teachers aides whom she will thankfully have again next year.  I do not care much for the school administrator/principal and I know that she and I will probably continue to clash over issues.  We had two major issues the first week regarding the drop off location and pick up location.  Thankfully, I was able to show a valid reason why it was in Annabelle's best interest that I drop her off each morning at the classroom door and NOT all the way across campus like they had me do the first two days.  Although this is the designated drop off location it was WAY too far for Annabelle who tends to walk slow most of the time.  Their solution was to put her in a stroller to keep her with the rest of the class.  I was not okay with that since Annabelle can walk.  I also made arrangements to pick her up at the classroom door instead of all the way across campus so that I could immediately take her to the restroom to catheterize her.  By 12:15 when school lets out she is overdue and we made the decision to not let the school aide cath her.  Once she is in school for the longer day I will demand that it is done by the school nurse and hopefully by that time she will be close to learning how to cath herself.

In the 8 weeks she was there she met 3 out of her 5 IEP goals - yay!  The 3 goals she did not meet were gross motor related so that wasn't too surprising.  I had mixed feeling if I wanted her to attend summer school or not but she did not qualify so it became a non-issue.  I was told that only kids that were behind were able to go.  I know she liked school but I know she enjoys playtime at home with her brothers and I way more so I guess it all worked out as it should.

School starts up again in September and although I know she will have fun I am not looking forward to the "drop off" tears as I call them.  Thankfully, when she did cry (which wasn't ever day) it was only a brief wimper and was done as soon as she walked into class but it still made me a little sad until pick up.